Blogging my experiences living life with mast cell disease. Sharing how my husband (Nick), service dog (Leni), pet dog (Bonk), and I find ways to enjoy life even with a rare disease and trust God even when things feel out of control.

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Friday, April 10, 2015

Saying Good-bye to Herman...Kind of...

It has been just over 6 weeks since I had my NJ tube (aka Herman) placed. When my doctor put it in, he said that I could keep it for AT MOST 6 weeks since studies have shown the risk for permanent sinus damage significantly increases when nasal tubes are kept longer than about 6-8 weeks. So we are at the end of my time with Herman...it's been a good run!

Am I excited not to have a tube in my nose anymore? YES! I am so looking forward to being able to sleep on my left side again and to not stick out so obviously when I'm walking around anywhere.

On the flip side, am I ready to be eating normally again? Unfortunately, no...

The plan had been for me to have the NJ tube for 4-6 weeks and hopefully during that time we would find a medication to stabilize my mast cells so I could begin transitioning back to solid food while still on the tube. Then, once it was pulled, I would be back to eating more or less "normally." Unfortunately that has not happened...we are still trying different medications, and in the mean time, my mast cells are still running the show.

Mast cells are involved in digestion. When we eat, mast cells release mediators to aid in the digestive process. Because I have such a high concentration of mast cells in my stomach and intestines, whenever I eat anything that actually needs to be broken down for digestion, the amount of the chemical mediators that are released by the mast cells overwhelm my body. Mast cells are also involved with allergic reactions, so when these chemical mediators accumulate I start having allergic reactions just to eating...not necessarily to the food. I've gone into anaphyhlaxis twice in the past month due to eating and the progression of my mast cell reactions...obviously NOT GOOD!

So since I can't eat normally, and eating is kind of necessary for survival (at least that's what I've been told, apparently my body is trying to defy the odds...), I will continue to need supplemental nutrition for the foreseeable future. We have made the decision for me to get a more permanent feeding tube called a PEG-J tube. This will go into my stomach and extend into my small intestines so I can continue running my formula into my intestines like I have been with the NJ tube. So while I will lose Herman coming out my nose, I'll still have him in my stomach...Herman II!

Please keep us in your prayers for the next few weeks. I am nervous. It is a big unknown. Even though it is called a "permanent" tube, it can be taken out. However, mentally, this has been a difficult step for me because it does feel much more permanent than the NJ tube.

I do not do well under sedation or anesthesia and am not looking forward to dealing with that again. When I had the endoscopy 6 weeks ago for Herman, I had a very difficult time recovering from the medications they used that time which are supposed to be the easiest on the body. I am nervous as to what medications will be used this time and how I will react.

I am nervous about how recovery will go after surgery. It is minimally invasive so hopefully recovery will be quick and easy, but I tend to take longer than normal for anything.

My mom will be coming out to be with me so Nick does not need to take time off work. Both of them will probably have their hands full taking care of me initially, so please pray for strength and energy for them as they are also dealing with work and other responsibilities.